disappointing news

If I could turn back time (sing it, Cher), there are two decisions I would have made differently in my lifetime.

The first decision came in 2005. I was 23 years old, alone, and had never made any medical decisions in my lifetime. I was experiencing very limiting lower back pain which blood tests, urine tests, and even a CT scan could not pinpoint a root cause for. Having no idea what I was agreeing to, I consented to an emergency exploratory surgery.

This surgery required 13 days in the hospital and a ginormous scar, vertically running up my mid-section. It turns out, my back pain was emanating from a kidney infection--something that could have been easily handled with antibiotics and fluids. 

Instead, I got what has turned into a decade of suffering.

During that surgery, the anesthesiologist used too large of a tube to intubate me, and the tube ended up cutting my airway at the subglottis. This is why I have scar tissue growing in my airway.

The second decision came in 2007. I was 25 years old, pregnant with my first child, and willing and ready to do anything I needed to do for the life of the child growing inside of me. I was newly diagnosed with subglottic stenosis (yes, it took them two years to discover the source of my breathing troubles), and my ENT at the time thought a "precautionary tracheostomy" would be necessary, to save the life of my child during childbirth. I didn't hesitate.

It turns out, that tracheostomy was never really necessary. I never needed to use it. I labored for over 48 hours without it. And I had it removed exactly six weeks after my son was born.

Instead, I got what has now turned into the need for a tracheal resection, as my tracheal cartilage has collapsed at the site of where my tracheostomy was.

I also got a really ugly scar that many ENTs since, have told me I need to look into plastic surgery to rectify.

Two medical decisions. Two total failures. 

So now here we are. All of these breathing troubles are finally coming to a head, and the last 10 years of simply maintaining my airway will not be enough.

My doctor and I just spoke, again, a little bit ago. He was calling to inform me that his partner is in agreement with his findings and that I do, indeed, need a tracheal resection. 

Here's the bad news. Well, it's bad news to me, anyways.

The subglottis is the upper part of my airway that was damaged in 2005. This is the section of my airway that I am consistently having to go to the doctor for, and what has racked up all these surgeries since 2007. The stenosis is literally right under my vocal cords, and my doctors do not think it is wise to attempt a resection on that area. 

If they damage my vocal chords, I would end up with a permanent tracheostomy.

Instead, they will only resect the area of my trachea that has collapsed. (I say that as if they're giving me the option, but really--I have no other option.)

But what this basically means is that I am going to go through with this surgery, and all of the invasiveness, and risk, and recovery that comes with it...and the likelihood that I will STILL need dilations of my upper airway is almost 100%. 

So really, this surgery doesn't solve everything...like I thought it might.

Fuck.

Talk about disappointing. 

My ENT mentioned that my upper airway still looks great, though. "It's open to about 85 percent!"

But I want it to be 100 percent. Eighty-five is not good enough. I want the use of all of my airway. Every single bit of it. 

Now I am waiting on a call from the Thoracic surgeon. I have decided to go through with the surgery as soon as possible, especially since now my ENT believes my recovery time will be only two to three weeks--he believes I will be able to shoot an all-day wedding at three weeks post-op (as opposed to the six that I was expecting). 

Once I meet with the Thoracic surgeon and he gets a look at my airway, he and my ENTs will create a surgical plan and get it on the calendar.

I'm terrified. I'm excited. I'm relieved. I'm disappointed.

I am so many things right now.